Working Theory

 The working theory from the hepatologist is this:

Right sided pain means right kidney stone and the right kidney is right there by the liver. Ergo this particular Rube Goldberg session was likely the kidney bitch slapping the liver.

Conclusion: It was a kidney stone.

Meanwhile, I've continued to drop weight. I am eating. I had that steak--it was delicious. I had a big bowl of ice cream. The liver didn't like it, but I ate it all anyway. 

I'm not exercising, not burning any calories, because I made my foot-issue-that-we-thought-was-because-of-the-spine-cyst-but-it's-not worse by trying to garden and ramp up to more of my regular activities. I've had to be on complete bed rest for the last two days to ensure I would even be able to walk to make it to my appointment with the hep.

I've also continued to be very tired. I actually napped the other day. I never nap. Not unless something's wrong.

I'm either recovering from the world's smallest kidney stone, or something else is brewing. Or maybe it's just some Ozempic fuckery. I have no idea.

I'm working on the out-of-pocket lab work to see what my cortisol and acth are doing.

And the hep is also retiring. So I will be losing all my cornerstone specialists in the span of six months. There is at least more of a coordinated effort to hand me off to another hep and not leave me flailing so hopefully it'll work out. 

Also on the board...my upcoming CHEK2 breast MRI uses contrast. The contrast is listed as an allergy in my records and no one has said jack shit about it. Because of the total silence on the subject, I assumed there would be no contrast, but I've since learned otherwise. This has resulted in me trying to contact them to make sure they know and that this whole thing doesn't devolve into some clusterfuck of stupidity.

Because I'm going to need someone to prescribe me 150 milligrams of prednisone or we're just wasting everyone's time.

There doesn't seem to be any process flow for MRI contrast allergies. They're rare (oh look, more rare shit is happening to me) so I guess the decision was to do exactly nothing for it because rare means it doesn't exist all too often in medicine. Or I'm somehow entering the process sideways and don't even know it.

Anyway, they sent me a bunch of paperwork about the treatment options to prevent breast cancer which includes prophylactic mastectomy and from the research I've read, there's a lot of those happening for CHEK2. 

Bah.

Here's the thing, I am likely in the last decade of being half way functional. I might go longer. I might go less. But I'm struggling more and more with mobility because of my spine (which is holding the line right now) and whatever is going on with my foot (and I have no idea how long that diagnostic process is going to take and also the problem is both joint and muscle which means it'll be a bitch to treat--my expectations of major improvement are low, but I invite medicine to prove me wrong). 

I'm not going to get better. There is no cure. I'm aging at what seems like an accelerated rate. I have a lot of tumors. My lungs are dodgy. Covid will eat me alive. I might hold the line for longer than I think, but my sense is these are the last years where I have any ability to count on anything functioning.

The point being, I'm not looking to spend them doing lots of heavy surgery. If I don't have breast cancer, I don't want a prophylactic masectomy. I don't think I'll have the life span to accrue much of the benefit from that. 

Also, post surgical pain management is a fairy tale, one that lies to patients, and I have so little relief from opiates that I come out of recovery looking like someone who uses a lot of drugs at home, which then means I get treated as an addict the whole time I'm in the hospital while also being told I can't have Advil or Toradol which are the things that actually work for me. And the asthma doesn't like anesthesia. And I have no interest in being sliced and diced and then having to feel like death and also advocate my ass off to improve my care in a system that can't seem to absorb patients like me on top of it.

That's a big ask. It's too much.

But the problem is the MRI contrast allergy, which usually pushes you into a prophylactic mastectomy. Or I take 150 milligrams of prednisone twice a year, once for the ta-tas, once for the liver.  Dude, that's a lot of fucking prednisone and contrast. Jesus. The prednisone is very hard on my liver.

That speaks to the point I'm trying to make, though. I'm getting to where my health is backing me into a corner. I can do x but it'll impact y or I can do z, but it'll impact a. Everything is a precarious tradeoff. It's not sustainable and it's going to eat too much of my time and energy.

I'm trying to find the balance between not being totally irresponsible with my health while also minimizing the disruption, risk, and the number of invasive procedures. There's no map. I don't know what the hell I'm doing. I don't want to accidentally kill or maim myself, but I'm not jumping into bed with the first surgeon swearing surgery will be awesome. 

I know better.